MIA

I know I have been MIA; I have quite a bit of catch up to do!

I saw this quote on Instagram this week and wanted to share it.  It has been on my mind and sums up how I have felt lately:

“There are moments which mark your life.  Moments when you realize nothing will ever be the same and time is divided into two parts – before this, and after this.”

I don’t know who said this, but I really like it and it speaks volumes to me about the brain surgeries.  My life will never be the same again and I can definitively see it divided into two parts: before July 27, 2011 and after.  Lately, I find myself having more difficulty communicating (processing) at work.  I feel like I stick out like a sore thumb and that people look at me like I have 3 heads or something when I speak.  I feel foolish and that people humor me to my face.  I feel that my co-workers laugh at me behind my back and wonder what I am doing there.  I fear I will make a mistake.  I fear that my co-workers won’t and don’t understand me.  I fear that I sound like a fool when I speak (and don’t make sense) and jumble my words to try to communicate.  Things don’t seem to be going right in my brain.  Things are getting harder and I am scared.  Having a conversation with someone feels OK; it’s when I have to follow a list, lesson plans, verbal instructions, etc. is where I find myself having problems.

I do not like it and I do not know how to tell if this is really happening, or all in my head.  I do not want pity; I just don’t want to look stupid.  I would rather stay home and not do anything.  Where does that leave me trying to earn income to support myself?  If I cannot be a properly functioning employee?  What am I supposed to do?  And I am not yet approved for Disability so this adds heaps and heaps of anxiety to my dire financial situation.  Will this ease up anytime soon?

“If you stay too much in the past it’s going to keep you there”

Have you heard of the show Married at First Sight?  Now, I don’t want to debate anything on this show, really.  It’s just a reality show like all the others (to me).  But, I do admit to watching it and last night one of the “experts” said this quote and it really resonated with me.  Here’s why:

I know I am stuck on the brain surgeries. I know they paralyze me with fear daily.  I know that I must use every ounce of strength I have to overcome the terror from those 2 experiences and move on.  I know this.  I know it’s my past.  I know it was 3 years ago.  I know that today I am not having brain surgery (and I better not have to have another one, but that’s besides the point!).  I know all this.  My rational mind tells me this every single day.  “It’s done.  Move on.  Get going.”  But I am here to tell you it’s not easy, folks.  Sure, there are good days, and even better days.  (Yoga makes some days better!)  And in fact, there are some days, that turn into weeks, where I don’t think of laying on the operating bed being wheeled into the operating room.  That I don’t think of exactly what I was feeling minutes before that.  Saying, “I love you” to my Mom wondering if I was ever going to see her again.    This is all my past.  I get that.  But the problem is that I am living with 2 brain tumors and the unknown of having another brain surgery(s).  I know that’s the part of life we all must deal with – the unknowns.  I didn’t know I was going to get 2 brain tumors, until I did.  And, I don’t know I’m going to get breast or colon cancer, until I might.  Or will.  Or who knows.  This is a weird road to be on.  This is a weird thing to have to wrestle with every single day.  This is my cross to bear, just like we all have our crosses.  These are mine.  I get that.  I’m not downplaying anyone else’s.

So, to the point of the quote:  If I stay too much “in” the brain surgeries, it’s going to keep me there.  How true is this!  It was magic to my ears, really.  But, no amount of Yoga, or substitute teaching, or shopping, or anything will magically “snap” me into the present.  If there were, I would have snapped that band years ago.  I’m sure if I wasn’t struggling so much financially it wouldn’t be so difficult to leave the past in the past. If I felt some semblance of my life “before surgeries” I probably would feel more confident in the direction my life is presently.  (Isn’t it funny how much stock we put into money? Or employment?  And when those are “taken” from us how much it rocks all we thought we were?) – in fact, maybe that’s the root of things.  That since I’m no longer working (I do substitute teach but I don’t really call that gainful employment) THAT is where I am stuck.  Or WHY I am stuck.  I don’t feel confident in my abilities as an employee, and to be honest, I don’t feel confident in my abilities (that’s not the right word but just work with me here) as a woman.  But every day I try to do this. I try to leave the past in the past and get IN my present and future.  And yet every day feels like a failure.  Utter failure.

Cowden Syndrome robbed me of that ability.  That choice. That right.  Yes, I believe it is a right of every woman to be a mother.  Not that every woman treasures that right, but that’s another post, too.  That beautiful opportunity to be a mother.  And these dang brain tumors robbed my confidence.  I don’t know what the answer is.  I don’t know the magic elixir to “get on with it”.  Because if I knew what it was, I would have drank it years ago.  I guess I am tired of things being hard.  I am tired of being scared.  I am tired of feeling weak.I don’t know how to tie this post up into a nice little bow and say, “Well, here it is.  Here is how you leave the past in the past and just deal.” 

 

This is my life.  It’s real.

Guess I need more of that hope today.

Two sides in every thing

I will now never know the joys of motherhood; but I will also never know the pain of uterine cancer or passing Cowden’s Syndrome to my child.

I was sobbing in the shower this afternoon as this realization enveloped me. Both sides of this comes with such a heavy price to pay.

My job is to find the peace in this decision I have made.

On Kinders

Student (as he slams his hand on his construction paper): “Teacher, I’m going to copy your shadow because I’m going to put your face right here!”

Me:  “Errrrrr……”

Student teachers practice teaching kindergarte...

Student teachers practice teaching kindergarten at the Toronto Normal School, Canada (Photo credit: Wikipedia)

“With you we have to be really careful”

The above quote is what the radiologist said to me yesterday morning.

Ah.

Part of me feels happy and encouraged with hearing this statement.

But then the other part of me struggles with the magnitude and the weight of it.

*

I got to the hospital at the scheduled time, 10:30 AM.  By the time the front office girls got everything in order, it was close to 11:30 before I got into the room.  I expressed to them several times, “Dr. L (oncologist) told me that the Radiologist is doing the exam.”  {Note:  I don’t ask questions really about rules or protocol.  If that’s what Dr. L said was going to happen, then you can bet I’m going to make DARN SURE that it gets done.  I don’t really give a rip if Dr. C (radiologist) doesn’t normally do pelvic ultrasounds.  I just am following the instructions of my oncologist.}

Ladies Room

Ladies Room (Photo credit: Vassilis Online)

Now, for you ladies who have had a pelvic ultrasound, you are acutely aware of the FUN I experienced in 2 parts!  After Part 1 was complete I don’t think I could have run any faster to the Ladies Room!  That’s where I met Dr. C in the hallway and he asked, “Are you Dr. L’s patient?”  [He said the giveaway was me returning from the restroom. HAH!]

Dr. C didn’t actually do the procedure but he was present in the room.  Poor technician girl was so nervous!  I could feel her anxiety around him!  He asked her for measurements of my left (and right, I think) ovary and then I heard him say, “endometrial stripe”.  No clue what that is.  I need to ask Dr. Google about that one.  And then I heard him say, “Well within the normal range.”  And then, “Sorry if I scared you.”

Bottom line, (I hope/think/pray/feel) is that this repeat procedure was just my doctor being cautious.  There was some discrepancy with my left ovary and further study was warranted by some of the medical professional who “take care” of me.  I’m OK with this (the further study, repeat ultrasound.)  Even though it did cause some deep fear in me for a while.  What’s the alternative, right?  

Next on my to-do list?  Get to my appointment next week and have her check my right Dairy Queen again to see if she still feels the “suspicion”.

Man.  Cowden’s Syndrome is an effing BEAST!

“But you can’t live like that.”

My mom’s quote – very wise woman.

It dawned on me today that Cowden’s Syndrome makes me fearful of making commitments. Or certain plans.

I have a long-term subbing job position (opportunity). I was offered the assignment it a few days before my ER visits of earlier this week.

I have fought some anxiety with how in the crap I am to do both: work (my life) and Cowden’s Syndrome.

I met my new endocrinologist today. (Dr. F is you see this…oh man. I miss you so much now!) – and I really do like Dr. S. He was funny and spent a lot of time with me. He went through (as thoroughly as he could) about ADH hormones and elevated/low levels and what they mean, and the possible Celexa connection. He’s starting tests, blood draws, and oh the best one. 24-hour urine collection.

Yep.

Diabetes insipidus is an autoimmune syndrome, evidently. I remember reading once somewhere that if you have one autoimmune condition you are more likely to get more.

[Cough.]

I called Mom after the appointment and said to her that Cowden’s Syndrome is a b*tch because it makes me feel like I can’t do anything. I’m scared to do ANYTHING because of doctors, appointments, etc. getting in the way.

Then she told me the above quote.

I thought about it afterwards that I just will do this job until I can’t anymore. Whenever that is. But my health has to be top priority and while I am committing to this position to the best of my ability, I only have today.

We all have only today.

 

Quote

“I am trying to become the person I want to be.”

This quote came to my mind last week while at the gym. I was busting out 200+ calories burned, [and feeling very frustrated that the number on the scale isn’t moving the way I’d like it to].

I’m going to write more on this – but for now…just this.

20130319-171231.jpg

Daily Prompt: Ready, Set, Go

I lost a very dear friend yesterday. He had terminal cancer and I only found out Sunday morning before I was supposed to go to church. This past Sunday was my day to teach Relief Society in the Lorenzo Snow Manual.

Relief Society

Relief Society (Photo credit: Wikipedia)

Now I wasn’t as ready as I could have been but I tried. But when I got the message about A I felt this intense urgency. This huge impression that I needed to drop everything and get to the hospital to see him. But I felt so conflicted with my calling! What was I supposed to do?!

I called a mutual friend and talked with him. E had seen him in the hospital the night before. He told me it was very serious and I needed to do what I felt impressed to do. E also told me, “Heather. Prepare yourself.”

Oh crap.

I called a few people at church but just ended up driving up there and told Sister C what was going on. She told me to do what I needed to do.

Driving to the hospital I was struggling with tears, but then I also felt peaceful. I felt this, “Hurry hurry” feeling….but I just knew it’d be OK as soon as I got to the hospital.

When I walked into Room 614 (617?) and saw him in his bed, I walked up to him and took a chair. I said hello (another person from church was in the room too) and waited a moment while they were visiting. The first thing I remember A telling me is, “The Lord’s taking me.”

So matter of fact. And A wasn’t crying, or showing any fear. Just speaking about what he’d learned in his life and what was important to him from the church and the Lord. He gave me some good counsel and while it’s personal I’ll share only one thing here.

He told me, “Heather. Do not settle.”

“Don’t just exist. Live”

A friend of mine wrote this quote to me last week; and I haven’t been able to stop thinking about it. Really. This has really struck me deeply.

Since July 18, 2011, all I have tried to do is figure out how to exist. After you have brain surgery twice…at least for me, it’s about figuring out where you exist in this world. Where you exist with your friends (figuring out who really ARE your true friends and who are vetting themselves out); where you exist with your job (or getting a new one); where you exist in your church, your community, fill-in-the-blank here.

Some days I think I’ve got it figured it out. I’m cruising along…just doing my thing, not worrying about any little thing. And then something happens and reality slaps me hard right in my face 2 minutes later.

[Oh…and let’s not forget the doctor appointments too.]

But after reading his letter and his very profound quote to me…I don’t want to just exist. I WANT TO START LIVING. Or, is it a matter of doing both at the same time?

And, dear readers….I ask YOU:

Those of you who are currently experiencing life-changing situations …are you trying to exist now? Or have you figured out HOW to live? What did you need to do to get past that hump? From just existing to living?

I’d love to hear from anyone who’d be willing to share…

I know this post is rather skim. Or slim. Take your pick. I’ll probably expand it soon or write a part #2 to this. I just wanted to get this down & generate some discussion hopefully. 🙂

Thank you

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Tiggerwigger

EDIT: 11/1/12

I’ve pondered about this post and phrase a lot the last few days.  HOW I am going beyond existing and actually living my life.  Volunteering with the cats.  Going to my nephews classrooms and to spend some time.  Getting out of my comfort zone and finding MY LIFE beyond Cowden’s Syndrome.  And although Cowden’s Syndrome and Lhermitte-duclos Disease do not define me – unfortunately (!) they are a part of me.  Always were…just never knew about them until last Summer and Fall, respectively.

So, as I embrace this blog and raising awareness for both of those genetic conditions, that is also helping me to LIVE.  People are searching either of those terms and coming across my blog.  So they can read about my life and see that although I struggle quite profusely at times, I’m learning.  I’m doing.  I’m growing.  I’m trying.  And, I guess as it boils down to it…whether you have a brain tumor or not, genetic condition or not…that’s the gist of life.

Struggle – learn – do – grow – try.